Sunday, August 28, 2011

Healing Anaya Video

Anaya's Second Birthday

August 26

The day dawned around six am.  The sun began to fill the sky with light.  Peeks of it flitted through the cracks of the bedroom curtains.  Stretching out and blinking I remembered that today was a very special day. I pulled open the curtain and looked at my little love sleeping softly on the bed beside me.

I kissed her forehead and whispered "Happy Birthday Princess".  She slept on.  I rested my lips on her and took a few deep breaths of her beautiful baby smell.  The love that I have for her infused my heart and my being with joy and energy and I began to think of all of the things we needed to do to prepare for the party that was happening in the evening.  I took a picture of her as she opened her eyes on her special day.

Good morning little love! I sang to her.  I smothered her in kisses and sang her the happy birthday song.  She seemed to know that something different was going on and she opened her eyes a little wider.

Gently I brushed the hair from her face and ran kisses from the edge of her lips all the way up to her cute little ear.  She smelled of mango, sugar and mint butter that a friend sent for her a couple days ago. smells amazing.  It smells edible.  We made jokes about how she smells good enough to gobble up!

"It's time for a shower!" I tell her and Brent undresses her and brings her to the shower.  I found a shower chair at a second hand store that is big enough for her to lay on in the shower.  We set her on it, on top of a towel and I pass the warm water over her with the detactchable shower head.  She loves the feeling of the water tickling her skin.  She sighs as I run it over her head and down her back.  I hold it on her neck and shoulders for a while.  The are always so tight lately.  I lather her up from head to toe with Earth Mama Angel Baby Wash that smells of oranges, rinse her off and pass her out to her Daddy who is waiting with a towel.

Baby in one arm, suction and oxygen in the other, Brent takes Anaya back to the bedroom and puts a diaper on her.  I meet them downstairs and we decide what the little princess is going to wear for the start of the day.  We choose a sweet little outfit that arrived a few days before from Lori and Irie.  It says "Birthday Girl!" and the pants have cupcakes all over them.  Once she is dressed I set her in her special chair and braid her hair.  I think I did a decent job of it and she looked adorable.

Next we began carrying things out to the RV that we were taking down to the park.  We decided it was the best vehicle to take because if Anaya needed a nap or some private space it would be accesible.  Not to mention that we had a whole ton of stuff that needed to go to the park for the party.  So we ate a quick breakfast, loaded up the RV and went down to the park.

Immediately we ran into a problem.  There was a class booked all day in the BBQ shelter.  I spoke to the teacher and told her that I had booked the BBQ shelter for the day, for Anaya's party.  I explained to her that we would be cooking and setting up all afternoon.  After I told her about Anaya and about how important this day was she conceeded to move her "babysitting" class of pre-teens over to another area of the park.  We helped her move the tables.

The Big Tent Event Rentals man (Buck) and Doug from Hairy Productions Sound came and set up the "stage" for our live preformers.  April came and decorated the shelter.  Brent and Kristian went to get more tables and the TV for the auction. Larissa arrived and we started setting up the silent Auction items.  Nancy Ryde came and saved the day by cooking up all the meat and beans we needed to feed an expected 300 people.  I ran back and forth from Anaya to the auction tables to the BBQ to the stage to see what things needed doing.  My friend Ray helped me by staying with Anaya while we got set up.

At 3:30 the first musician showed up and started playing.  Sebastian sang some beautiful songs in spanish.

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The teacher with the babysitting course was a bit upset by the "noise" and asked us to turn it down.  It was pretty lame but I understood.  There had been a misunderstanding somewhere along the way and we needed to comprimise to keep each other happy.  I ran to get Anaya out of the RV and dressed her in her lovely pink birthday dress.  Initially I had her in her stroller, but almost immediately had to switch to the wagon because her secretions were a bit wet.

Ruby of "The Fable Cottage"
More people began arriving around 4 and then The Fable Cottage began singing.  Her music was lovely.  No one was really dancing so I decided to pick up Anaya and dance with her.  I removed her oxygen for a few moments and kept an eye on her lips to ensure she was breathing ok.  Here is us dancing on her birthday.  Ruby is singing in the background.

The afternoon began to blur after that.  I pulled Anaya around in her wagon caring for her while greeting people and trying to ensure that everything was running smoothly.  My stress level was a bit high and I struggled to remain grounded and focused in the here and now.  Eventually I just held my little love and took some deep breaths and it helped.  But I still had anxiety.  Here are some pictures.  A lovely young couple came and ran some kids games, unfortunately I didn't get any pictures of it!

The Stage 

Anaya's Incredible Cake made by Allison Schlosser

Anaya and I listening to music in the shade

Angel decides it's time to cuddle Anaya

Angel and Anaya listen to music together.

Anaya's Cake, Angel and Anaya (in Wagon)

Sleeping babies.

It's my party and I'll sleep if I want to!

So cute.

Anaya got the first piece of cake.  But she was sleeping during the song..
I sang her happy birthday over the P.A.

What a wonderful birthday!
We had some incredible music by "Mountain Station" a folky jazzy band.  I didn't get pictures of it though...they were amazing.

We had an incredible Video put together by Mike Coules of Mammoth Productions.  Everyone watched it.  Some people cried.  It was incredibly well done.  I'm uploading it to You tube as we speak.

The Live auction happened just after the cake.  Most of the items sold for half of their value.   For example the helicopter ride for 4 (value of $400) sold for $120. There were less than 100 people at the party.  I had hoped that with all of the media attention Anaya had been getting the past few weeks that more people would show up, and that our auction would be more exciting.  We had very few bids.  So  items in the auction didn't sell.  I still have some things that I will put online and try to sell them that way.

Adham Shaikh, a local DJ and electronic music artist began playing after the live auction and his music inspired people to dance.  He was a very grounded soul with loving eyes and a calming, cheerful presence. He thanked me for inspiring other mothers.  I thanked him for creating my favorite song.  It's called "The climb" and it so clearly illustrates my life in music.

The people that showed up were incredibly loving and supportive.  I have so much gratitude in my heart to the people who made it a priority to come to Anaya's party.  It was a beautiful and sunny day and Anaya was healthy and strong and enjoyed the whole thing.

Last to play was the Nelson Samba band.  Holy MOLY!  I should have had them play first.  Maybe their loud beats would have brought more people to the party.  They were AMAZING.  I simply don't have words to describe it.  I wish I hadn't been so tired.  I had hoped to dance to their music and spin some fire but I was simply exhausted and I remained with Anaya in the RV at that time.  It was dark and we were trying to clean up the silent auction.  So many items were unclaimed that we had to gather them all up and put them in the RV.

The rest of the night was a blur.  I remember getting home and falling into bed.  The next day I worked all day on auction items and organizing.  In the late afternoon we took the kids to the lake and jumped in because it was so hot out (35 celcius, 96 F).

I'm still busy trying to call people to pick up their silent auction items that they won.  I also need to get my thank you's out to everyone that contributed to the event.  The house is a disaster,the yard is overgrown, the RV is full of unclaimed auction  It's okay.  It will all come together.  The main thing is that the day was a beautiful success and that Anaya is so healthy and alert and concious.

We have recieved some beautiful packages and cards for Anaya in the mail and I thank you all.  Please accept my apology for not thanking you each individually.  I simply don't have the time at the moment.  Rest assured...your gift has arrived, and we are so thankful that you took time out of your life to think of our little love.

Anaya is doing so well.  She has just woken up and I should go and welcome her to the Day.


Thursday, August 25, 2011

Busy Birthday Eve

A story in pictures.

Puppy Love.
Anaya and Angel


With Valencia (Ray)

With Grandma Marlene.

Another day in paradise, another moment with my little love. Forever embedded in my heart.

Monday, August 22, 2011

The day Jack Layton Died

A truly awsome human being graduated from this lifetime today.  This morning Canada's leader of the opposition died.  He was fighting cancer.  His last words, written in his own hand, to humanity were these:

"My friends, love is better than anger. Hope is better than fear. 
Optimism is better than despair. So let us be loving, hopeful
and optimistic. And we'll change the world." - J.Layton 2011

Today was one of the best days of my life.  My house is a disaster, the lawn is unmowed, my hair looks like a tragic accident and I have bags like a raccoon.  But the thing is that today was absolutely amazing anyways.  Anaya and I both slept well last night and woke up refreshed.  I spent the morning getting things organized from my computer and on the phone and then I got Anaya ready and took her on a walk.  

Brent came outside and helped me get her down the stairs.  Her secretions were good enough today that she was able to sit up in her stroller without choking.  Our dog Buddha follwed close behind me at a safe but respectful distance.  I never have to worry about him running off any more.  He has really come along since we got him 4 years ago. I told Anaya about the houses we were passing.  I just kind of rambled on about each step of our journey outside.  I smiled and beamed love at Anaya as we walked.

How beautiful she was.  How awake she was.  How incredibly concious and aware she was.  I had to stop and take a picture of her.  She was just so beautiful.  This was the first time I got to take her out in her new pink stroller.  The manufacturer replaced the black and grey one on warranty because the wheels were no longer turning properly.  While it's still not a "special pediatric stroller" it certainly did the job today. We tied the oxygen bottle to the back, where it hung in it's blue bag.  The suction I hung from the pushing handle.  I used various things to support her head.

As we walked along with the dog, Anaya and I both marveled at the warmth of the sun on our faces and we rejoiced to be out in the fresh air.

 We stopped at OSO Negro coffee house where they have a jar for collecting donations for Anaya.  The barista's cooed and ahhh'd over her and she showed everyone her beautiful eyes.  Most of the time she had her gnaw-gnaw in her mouth, she wouldn't let it go!

 We walked over to Cowans office supplies and had some posters printed for the birthday party.  While we were waiting for them a man came up to me and talked to me about Anaya.  He said that every time he drives by our house with his kids they all point and say "Look!  It's Anaya's house!"  He asked how she was doing and I told him that today was our best day in a LONG time and that I couldn't be happier.  I only had to suction Anaya a handful of times and she didn't turn blue ONCE!!  I asked him if he worked at Cowans and he told me he was one of the owners.  I told him I was having some posters printed.  He said "I know, can I donate those to you?" I smiled and said that would certainly be appreciated.  The poster is a beautiful one.  It was designed by Paddy at Big Cranium designs.  It is so perfect.  So fitting. The hearts surrounding Anaya's sweet little angel face are so cute.  Thank you to Cowans and Big Cranium.

Continuing our journey we started up one side of Nelson's downtown street, Baker St., and then went up the other, handing out posters to store owners and sponsors.  Anaya was awake and happy the whole time.  I think I was radiating joy.  As I walked people would look at me and smile.  Maybe it's because I was smiling...

I got this shot of Anaya helping me put up posters.  Isn't she sweet.  The Poster is bigger than she is.  

I got to see an old friend today. We went to school together and learned about the environment together. I also got news that although my grandmother fell down the stairs and broke her arm she's going to be alright.  

It wasn't until I got home and sat down to blog that I found out that Jack Layton had died.  For a moment I was sad.  Then I felt a sense of happiness.  

I thought to myself "Good on You Jack.  You lived your life on purpose.  You created your dream.  You did it!  You've completed your life's work. "

 I hope that one day someone will look at my passing with happiness and say the same thing.

I'm sorry that I haven't gotten to answering my email in the past few days.  I'm trying - I really am.  I've been exhausted and today really needed to be all about Anaya.  If you are waiting for a reply from me please send another message if it's really important.  Your old one might be buried in the chaos.

Lots of LOVE!

What would I say?

Recently a woman posted a link to a beautiful story on the Anaya Initiative Facebook Page.  The story was about how a mother with a disabled daughter wished she could tell a new mom with a disabled baby all of the things that she now knew from experience.  It is beautifully written and very true.  I want to share it with you so here it is:

What I would tell you...
© Copyright 2011 by Julie A. Keon. All rights reserved.

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to— they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates……..even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

 I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people— the cashier at the grocery store or your insurance broker or even your hair stylist— will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon
June 29th 2011
Now online at

 I'm really sorry but Anaya just woke up and is having difficulty.  I will have to finish this post later. - Love Camara

Sunday, August 21, 2011


I will write as soon as I recover from the exhaustion and stress I'm feeling. I'm burnt out and overwhelmed.

Solara's father, Kristian, is here for the week. He arrived today. I'm so thankful.

The good news is that Anaya is doing great today.

If you live in Nelson and you have time to help me friday for Anaya's birthday please email me. maraglow at

So far I have 3 helpers for an event that expects like 500 people and I'm freaking out with stress.

Need help with
Cooking ground beef (for burritos -30lbs to be cooked day-of.)
BBQ hot dogs
Cutting veggies
Warming beans / burritos
Keeping food area clean

Kids games helpers

Setting up auction items
Manning donation boxes and stamping people for party
Live Auction spotters
Online auction update person

Please. We need people.

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

Saturday, August 20, 2011

Apple Cider Vinegar Baby

The night was short and beautiful.  I slept well for the first time in ages.  Anaya slept through the night, although I woke a few times to check on her.  She was very congested in her nose.  This morning I started doing research about sinus infections and found out that most of them are caused by mold or fungus.  You can inhale mold/fungus spores and they can get into your sinuses and breed there.

I found a site that talked about drinking apple cider vinegar daily.  This reduces phlem and also provides a more inhospitable body environment for the nasty fungus. (Those of you with recurrent yeast infections take note!) It also talked about oregano oil, citric acid and vitamin C. So I mixed up all of us a morning drink.

(per drink)
2 tablespoons Apple cider Vinegar
1 cup hot water
1 big spoon honey
1 tsp lemon juice
1000 mg Vitamin C
5 drops oregano oil or spirits.

Drink as hot as you can stand it.  Trying to inhale the vapour as you drink it.  It should provide a bit of relief almost immediately, reducing congestion.

Then I rinsed out her nasal passage with buffered saline mixed with a splash of hydrogen peroxide.
Then I gently sucked out her nose with the suction machine (because she cannot blow her nose)

After all that her nose is COMPLETELY clear now.  She is a bit more wet and dealing with secretions but at least she can breathe through her nose!!

If anyone in Nelson can volunteer some time I need some help over the next 6 days with the party and the house.  Please feel free to facebook me.

Need: Someone to put up posters!
Need: Tent for shelter for Bands
Need: Volunteers to BBQ and set up auction
Need:  Someone to pick up tables from the Hume and take to park.
Need: Personal assistant for the day to help me with Anaya.  Someone who is willing to learn how to suction.

Thursday, August 18, 2011

Birthday party and then some respite!

Many of you know that Anaya is turning two next week!  This is an incredible and miraculous event.  Baby Anaya's Birthday Bash is happening on Friday the 26th here in Nelson BC at Lakeside park.  The whole city is invited.

It's a big deal.  We were told not to expect her to live that long.  She has outlived the average age of death of a Krabbe baby by almost a year.  For the last three weeks she has been battling pneumonia and today I can say with confidence that I believe she has overcome it!!  She still has a bit of a runny nose but is getting stronger every day.  Her lungs are stronger, her breath is coming easier.  She hasn't had any prolonged apnea episodes.  She is struggling still with increased seizure activity.  Her little arms and legs twitch and she's having muscle spasms.  She needs to go to see the Palliative Care team and the metabolic specialists for help with these developments.

After the big event next Friday we are going to take her down to Canuck Place Hospice in Vancouver for some respite *not end of life care** and to get the medical help she requires.  No longer having nursing in our home has been an interesting and draining experience at the same time. In order to facilitate our whole family being able to be with Anaya near the hospice, my grandparents have arranged to let us use their motor home for an extended period.  The temperate climate of the coast will be easier on Anaya. Travelling with her in a vehicle is so difficult.  She has so many items and machines that she has need of on a moment to moment basis.  Having the motor home for a transfer vehicle and as a place to stay while we are down there is essential. My uncle brought it to our house the day before yesterday and dropped it off.  I'm quite excited about it.  It's an old 1987 Ford Vanguard.  The interior is so 80's that it can't help but make me smile.  Pink Carpet, floral wallpaper, baby blue seating.  The main part is that it runs and everything works.  It has a generator to provide electricity for the oxygen and suction machines.   We don't know how long we will need to be there for, and so we are bringing "Home" with us!

 I am so incredibly grateful to Albert and Vivian Medland for their motor home!  We love you grandpa and grandma!

With the help of Anaya's supporters and The Anaya Initiative, we hope to stop in and talk to a few groups about Newborn screening for treatable diseases like Krabbe and also speak to children in schools about Children with disabilities.  I had a dream that I was going from school to school with Anaya and speaking to assemblies about how people with disabilities have their own purpose too!  That it is OK to stop and talk and communicate with the disabled and to be inclusive of them.

I feel as though this dream was a message from God and the Universe telling me what path we are meant to take from this point forward.  As Anaya continues to get better I am going to start working on finding people / groups / schools who would be interested in having us speak.  We want to raise awareness about this disease so that one day every baby born with Krabbe will get the opportunity for a longer, higher quality life!

I want all of you to know how much your help is appreciated.  We now have 85 subscribers to the blog raising $842. a month for us to take care of Anaya.  All other donations are going into Anaya's account for her care and medical needs.  I will continue to write as often as possible about Anaya, giving the best I can to you, our readers. You are our Angels.  I am also planning on writing a half truth/part fiction story with Anaya as a central character.  You'll be the first to read the first chapter :)

Wednesday, August 17, 2011

Getting Better!

Just a quick note to let you know Anaya is doing really well and we firmly believe she is pulling through!

I have a big post to write. So many things to tell you!

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

Vedic Energy Session

Monday, August 15, 2011


Anaya almost died yesterday.  We were at home.  My friend Danielle, who is a nurse, was visiting and helping out.  I went upstairs and had a nap, taking advantage of her watching Anaya for a while.  I came down around four in the afternoon.  Danielle was leaving so I thought I would pick Anaya up and change her diaper and hold her for a snuggle.  As soon as I changed her position she started choking.  It was a terrifying experience for her, and for all of us.  This was the worst it's ever been.  The closest she's ever come to leaving us.

She couldn't get a breath.  Her eyes snapped open.  They were huge, wide and panicked.  I've never seen her eyes so wide open since she could see.  It was like she was staring right at me, begging me to do something.   Her mouth opened in desperate scream...but no sound, no breath came out, no breath went in.  Her lips went blue, her face went blue, her hands and feet went blue.  Her eyes darted back and forth desperately.

I fought down panic and put her facedown over my knee and rapped on her back, trying to dislodge the obstruction from her airway.  After a few seconds I flipped her back over to look at her face, and to suction anything out of her mouth.  Danielle ran across the room to turn up the oxygen, unable to find the source (which is upstairs).  Solara jumped up from the couch and danced around the room in panic saying "Do something!  Do something!  She can't breathe!"

I shouted "Danielle!  Help me!  We need more oxygen! I can't get her to breathe! What do I do?"

She took the few steps across the room at a run and we had a blue baby pass off that most football players would envy.  It was so fast I don't even remember it.  She held Anaya in a drainage position and worked some kind of magic.  My little love took a breath! Immediately I took her back from Danielle to calm her and soothe her.  Her eyes were wild.  Her breathing became rapid and the color began to return  to her face.

At that moment Brent walked in the door.  "Turn up the oxygen!" I yelled.  He immediately sensed the urgency of the situation and ran up the stairs, taking three at a time.  Right away the flow of oxygen in the nasal prongs increased and her face flooded with color.  Her perfect little lips turned red, and her panic began to recede.

I held her and kissed her and loved her.  Solara hugged her. Brent kissed her.  We all were together.  Danielle stood at my side and waited for the moment to pass.

It was so fucking intense.  I was elated that she was still alive.  We all were.  So was she.

I always thought that when Anaya died it would be peaceful.  That she would just stop breathing in her sleep and drift away.  I never envisioned a traumatic death of asphixation before my eyes.

Then at bedtime she was seizing so badly she needed Ativan.

So that was what happened yesterday.

Today I was an emotional mess.  I cried when I woke up.  I cried when showing the house to some people (I need to move somewhere cheaper), I cried when my pharmacist asked how I was doing.  I cried when the bank teller asked how my day was.  I cried looking at the wall of vitamins - wondering if any of them would help Anaya come out of this pneumonia. I cried just thinking about her face.  Her wide eyes, her fear.

Today was the first time I've left the house in five days.  It was surreal.  Like a completely different world.  Solara and I ran errands together.  Brent stayed at my house with Anaya.  We got home as quickly as we could...and then Solara and I played "Wild Leaf Restaurant" up in her room.  She made me an imaginary meal.  It was good to be alone with her.

Anaya slept almost all day today - a side effect of the Ativan.  Hopefully she is healing inside and getting good rest.  We continue to love her and cherish her.

Please subscribe to the blog so that we can be with our baby girl.

Sunday, August 14, 2011

A letter to people

Our Story about “Healing Anaya- Healing Humanity”

Written August 14, 2011

Her golden hair sparkles in the sunshine.  I bring my lips to her forehead and kiss her soft delicate skin.  Inhaling her sweet baby smell, my heart melts and my whole body tingles with the energy of mama love. Touching her hair with my fingertips I wonder at the little curls that spring up behind her perfect little ears.  I enfold her in my arms, and lay down beside her.  Just to be with her.  To enjoy every second of her.  She is dying.

On this day in 2009 I started having contractions.  Gut wrenching, make my legs shake contractions.  Inside my womb was a beautiful, healthy baby girl.  She was rambunctious and strong, kicking and stretching.  She’d push her little foot against the side of my tummy until you could actually see it.  Brent and I had already chosen a name for her.  Anaya.  It means “God’s Answer” or “Completely Free”.

We could never have known what the next two years would bring us.  Anaya entered the world on August 26.   She was completely whole and perfect.  Her apgars were normal, she squalled and waved her little fists about.  She nursed well and I took her home the next day.  For months everything was wonderful.  She had the most beautiful little smile, and would even mimic my sounds when I would coo at her.  She’d laugh.  I’d melt.

At four months the nightmare began.  She cried and was irritable all the time. She started choking at the breast.  We took her to emergency.  We were directed to the children’s hospital.  After weeks of intensive tests we were told that our baby Anaya’s myelin was disappearing from her brain, and her nerves.  That she would lose all of her abilities.  That we should take her home to die.  We left the hospital and drove home on Valentine’s day. 

We tried everything.  Naturopathy, Chinese Medicine, Conventional Medicine, Herbs, Homeopathy, Brain Gym, Faith Healers.  She continued to get worse.  I remember the last time she looked at me and smiled.  We were on the couch.  I was cuddling her.  She looked right into my eyes, into my soul, and she smiled the most beautiful smile I’ve ever seen.  Her hazel green and brown eyes seemed to have incredible love and wisdom in them.  I was entranced and stared at her until she looked away. That night she lost her sight, and her smile.

Anaya never sat up, never learned to crawl, and never said the word “mama” – but I’ve heard it in my heart.  She has become my teacher.  My mentor.  She is God’s Answer in my life.  I needed to learn about compassion.  I needed to learn patience.  I needed to learn what the meaning of life was.  All my life I wanted answers.  I wanted to know why I was so different from everyone else I had met.  Why it seemed as though humanity had started to lose their sense of self.  Why I did not have a sense of self and a feeling of purpose.  I started writing an online blog about my life with Anaya, sharing the ups and downs, the joys and the hurts.  People read it and understood.  I expressed my heart explicitly and found support and love.

Anaya became known nationally in Canada as the “Breast milk Baby”, as she could not tolerate formula and was now tube-fed.  I pumped for 10 months but was unable to produce enough to feed her.  Almost a hundred women from across Canada shipped us their frozen milk, and it is still her main staple food at 23.5 months.  Anaya has supporters all over the world who think of her with love.  She has taught so many people, through me, about finding the true joys in life and living in the moment.

Right now Anaya has bi-lobe pneumonia.  We were discharged on Wednesday from the hospital.  The doctor said there was nothing they could do, unless we wanted to put her on more intensive life supports.  We had always promised Anaya, and ourselves, that we would never do that to her.  When it is her time to go, we will let her graduate from this life with dignity, respect and love.  We will hold her close in our arms, in the comfort of our home and celebrate all the joy she has brought us and the lessons she has shared.  So we took her home.  It upset my nurse, she disagreed with our choice.  After an emotional argument she quit, and my nursing agency withdrew nursing support from our home.

These past few days have been rough.  Anaya needs care 24 hours a day.  I need to stay with her.  I promised my baby that I would be there to hold her when…she flies to heaven.  I still pray and hope for a miracle.  That she will overcome the pneumonia.  That she will regain her eyesight.  That one day I will see her smile and hear the word “Mama.”  I have faith, it is possible.  Anaya will turn two in 12 days.

I’ve asked people touched by Anaya’s life to help us through this time financially by subscribing to my blog or making a donation.  I ask you, please, read it.  Anaya’s lessons will touch your heart and inspire your soul.

Written by Anaya’s Mama. Camara Cassin

Saturday, August 13, 2011

Schnitzle Saturday

Monica stopped by Friday to soothe Anaya's neck.

The morning dawned early.  Anaya was choking and sputtering.  The entire night she had been so thick and gurgley.  She was so wet yesterday that just before bed I gave her a drop of atropine to dry up her secretions.  It was a huge mistake.  I thought I was doing a good thing, because she was having such a hard time, choking on the excess saliva.  But it reacted badly and all the junk in her lungs got even more stuck.  Her breath was so bubbley, her chest rattled and she struggled to cough, but couldn't.  It was a nightmare.  I was up with her for hours, suctioning deep into her throat to get the thick white and yellow mucous.

Six am came.  I gathered Anaya in my arms and carried her, and the suction machine downstairs.

Her papa was sleeping on the couch.  "Brent, can you take care of Anaya so that I can sleep for a few hours?"

"Mmmhmmm..." He said.  He stood and stretched.  I helped to set Anaya up on the tilted surface of the wedge, head down.  I was hoping the mucous would drain from her airway and out of her mouth.  Brent sat next to her on the floor.  I went upstairs to bed.  My head throbbed and my neck was so tight and ucomfortable that I had trouble finding a comfortable position on the pillow.  Eventually I fell fast asleep.  I awoke around nine thirty, opening my eyes to a bright and sunny day. Immediately I thought of Anaya downstairs.  I jumped up, put in my contact lenses and flew downstairs to see how she was.

"Is she okay?" I asked.  Brent looked up.  His blue eyes were tired and concerned.  I knelt down and put my hand on her chest.  I felt her lungs expanding and contracting.  I looked at her color, I kissed her cheek.  Brent placed his hand on my shoulder.  I looked up at him.

"Good morning"  He said, smiling.
"Good morning" I smiled back.  Anaya seemed much better.  The mucous had started to drain, she was much less thick. Her breathing was much easier.  She slept.  Admittedly she was upside-down, but she was sound asleep.  I sat down on the couch and opened my computer.  I checked the Anaya Initiative Facebook page and my e-mail.  At that point a nurse named Meghan arrived. and we talked about her possibly working with Anaya.

She was young, tan and cheerful.  She knelt down beside Anaya and touched her.  We spoke about Anaya's key care needs, and how we like to give Anaya the best life experience possible.  I explained that although she has severe pneumonia right now, I have faith that she is going to overcome it.  Meghan liked the idea of working with Anaya and told me she is available three days a week.  I told her that nothing was certain yet, as we are still working on getting government funding for independant nursing.  We agreed that we would submit her resume to Anaya's lawyer and work on getting something set up.  If it is at all possible I know that Jennifer Williams can do it.

Meghan left.  I lay Anaya on the couch beside me.  Setting my computer in my lap I began searching for techniques that could be used to help bring the phlem out of Anaya's lungs.  Brent brought me coffee from the kitchen.  Oh, coffee. Nothing like Nelson Freshly roasted OSO Negro coffee.  If you've never had it let me know and I can help you get some.  Oh sweet heavens.  Dark.  Deep. Delicious. Smokey.  mmmmmmmmhhmmmmm.  If I have to leave Nelson I usually try to remember to bring some with me so that I'm not stuck with weak, tasteless stuff that other people call coffee.  If you like Starbucks coffee you'd like OSO better.

I gave Anaya some percussion on her back and chest and suctioned the yuckies out of her mouth.  I admired the pink and blond braid I plaited into Anaya's hair.  I posted it on facebook for everyone to see.  It made me smile.  I got a text from my friend Amelia, she asked if she could do anything to help today.  I messaged back "Do you know any amazing massage people?  Anaya's neck and shoulders are spasming and seem very painful."  She messaged back that her friend Jill would be calling me.  It wasn't long before Jill showed up at the door.

Jill was a kindred healing spirit.  Her presence was calming and beautiful.  She massaged Anaya and I took this picture.  My little love sighed and bubbled.  She was so wet, but at least it was coming out.  I placed a diaper under her face to catch the dribbles.  A receiving blanket is not enough anymore to soak up the drool.  During the massage some really thick mucous came out.  Thank God.  I'm so glad that the guck is breaking up in her lungs.  To me it means she is getting better.  I checked her temperature with my lips.  Kissing her head I noticed that her body temperature was perfect.  Not too hot.  Not too cold.  Jill finished and was about to leave when she asked how I was.  I told her how my head had been aching for days, my neck hurt and I have been so stressed out, tired and emotional.  She pulled up a chair and told me to rest my head against Anaya's changetable.  I leaned forward and held Anaya's hand.  Jill massaged my shoulders and my neck.  It was amazing.  I'm so glad that she is coming back again tomorrow.  Anaya and I both benefited so much from it.

Later in the afternoon Brent and I took Anaya upstairs for a bath.  It was short because she couldn't lay on her back for long without choking.  We got her all cleaned up though, and then took her downstairs.  I wrapped her in her mama taco towel and gave her the special teether.  I call it her Gnaw-Gnaw because she bites on it so hard.  She just loves the thing.  I brought her hand to the handle and she grasped it.  Moving it to her mouth, she bit down on it and held it there.  She was so cute, with her bambo doll, her taco towel, her braid and her Gnaw-Gnaw.  The saliva continued to pool from her mouth but she lay on her side.  She was wide awake, aware and beautiful.  It was at that moment that I knew she was at peace.  Living, dying, who knows...but at that moment she was happy.

I did some work on my computer, staying near her to suction her and soothe her.  Brent ran out to get groceries and go to the drug store for me.  Solara played in her room with her Lego.  She's a lego fiend.

I wrote out an email to all of Anaya's angels that have ever helped us out.  I asked for financial support.  I asked everyone to help out just a little bit so that I can stay with my baby.  I swallowed my pride and sent it. Shortly after that Solara came downstairs and said "What am I going to do?"  I suggested she help me make dinner, seems as how Anaya was doing alright.  We put Anaya in the wagon and wheeled her into the kitchen.  I taught Solara how to make pork schnitzle.

 Here is the Wild Leaf Recipe for Pork Schnitzle for 3:

6 thin small boneless porkchops
3 tablespoons dijon mustard
2 eggs
1tsp garlic salt
1tbsp Keg steak spice
1/2 tsp pepper
2 cups bread crumbs
1/4 cup frying oil

Mix the mustard, eggs, and spices in a shallow dish.  Hammer the pork chop with a meat mallet until you get all your stress out and the chop is paper thin. Dip meat in mustard sauce, then lay the meat on the breadcrumbs, patting it lightly.  Flip it over to coat the other side.  Do all chops.
Heat the oil on medium heat in a frying pan until it reaches a sizzle when you place a drop of water in it.  Fry each schnitzle for about 3 minutes a side.  Place cooked schnitzle in 200 degree oven while frying the rest of them.

And that's It!  Delicious!  Solara did a magnificent job.  We also ate veggies and leftover rice with it, but Sola's Schnitzle was the hit.

Anaya is sleeping soundly in her wagon still.  I should check on her again now and change her diaper.  After that it will be time to give her the steroid nebulizer full of muco-mist, ventolin and pulmocourt and give her some more chest physio (upside down chest thumping with a strategy)

Here's to a beautiful and miraculous day.  Anaya seems to be winning.  Please pray for her, or just give her a mental hug full of love.  Thank you.

P.S - I'm sorry for making everyone cry yesterday.  I'll try to write some more positive posts.

Friday, August 12, 2011

Tink Tink Buddha

I have no idea what to title this post as.  Solara has been staying with a very trusted friend these past few days.  It has been her choice, she has so much fun there. Death has been hovering over our house and I think it frightens her. Words come and go through my mind like leaves scattered in a fall wind.  Anaya and I are alone.  The house whirs with fans blowing, the dog scratches, his collar sends a metal tink-tink sound through the room.

There is a Buddha on his collar.  His name is Buddha.  Buddha came to Brent and I almost five years ago.  He was a six month old puppy that had been abused and neglected.  Over the years he has come out of his shell, become happy, playful, friendly and even a bit snuggly.  He's sitting now, staring at the door, waiting for someone to arrive.  I think he's waiting for Brent.  Maybe he senses Death too.  Solara took him for a walk up to the park when she visited Anaya and I today, and I've let him out into the yard, but he would really love to go for a big walk - a run even.

Sometimes I drive him up to the cemetary.  Nelson has a huge old cemetary with a road ringed through it.  No one is ever there in the early evening and if I have care for Anaya sometimes he and I will run around it.  The beautiful old tombstones remind me of how our earthly existance is so ephemeral.  What were these people's hopes?  What were their dreams?  Did they live a life of Love? or of Fear and pain?  Do their relatives still live in Nelson?  The saddest graves for me have always been the children.  I always wondered how and why they died, so young, so fresh to life.  I've never been afraid of graveyards.  They are so still and calm. There is an energy there.  Reverance. Respect. Dignity. Love.

Anaya will not have a tombstone.   We will have her cremated and her ashes spread on the wind.  She will become one with everything.  We will see her in the eye of a sunflower, in the shine of a water droplet, in the tickle of the rain, in the heat of the sun.  She will be free and she will be eternal.  She does not need a tombstone, a relic of those left living.  She will be mountain meadows, fields of wildflowers, orchards of the sweetest fruit.  Her smile will be seen on the faces of daisies, and in the eyes of mothers world wide. She is love embodied and her soul will radiate outwards, infusing all of the world with her love and goodness as she passes.

My little love.  So soft and pink today.  My little puddle.  So wet.  So incredibly wet.  I wish I could give her something to calm her secretions but with the pneumonia that is just not possible.  She is so beautiful today in her pink knit dress.  Her lips have returned to their perfect pinkness and her cheeks are plump and rosy.  Her fingers lay still as she sleeps, just next to the syringe of water that I am easing into her tummy.

"There you go love, you need water to get better!" I say to her, unplugging the feeding tube from it's spot on her tummy and pulling her dress down.  Her eyelids flutter and she sighs, as if to say thank you.  It reminds me about a conversation I had with her yesterday.

I told her she can go.  She can leave whenever she needs to.  I told her that we love her and we know she wants to stay with us but that if it's too hard we understand.  We don't want her to suffer, and we will not interfere with more intensive life supports.  We will allow her to graduate from this life with honor, dignity and respect.  I cried, silent tears streamed down my face and I buried my head gently into her side.  Next to her heart.  I remembered each moment of her life.  Her birth, her babyhood, her sickness, her nowness.  I felt her soul encompass mine in it's enormity and surround me in what can only be described as a soul hug.

She felt sad that I was sad.  That made me cry harder.  I sobbed myself dry and looked up into her face.  Her blind eyes opened and she looked at me.  She sighed again.  That sigh that says "I'm okay mama, I'm happy, don't worry.  I love you."  Then she closed her eyes and stopped breathing.

My heart stopped.  I waited. My eyes teared up. I waited.  My mouth went dry.

This is it.  I thought.

 I watched and I waited for her to take another breath.  She went ashen. Her lips turned blue.  Her mouth opened in a giant yawn...and she took a deep breath in.  I let a deep breath out and cried with joy.  Oh baby!  Oh my baby!  Thank you for staying.  I know I'm supposed to gladly let you go, but oh I'm so glad that you stayed.

We snuggled up and went to sleep and I had no idea if she would live through the night.

This morning I woke up and she was feeling better! Stronger! Vibrant and alive.  I'm not done yet mama!  She seemed to say to me.  I scooped her up in my arms and went downstairs.

Please, if you love Anaya and you like reading the us out...

Then I began dealing with crisis after crisis. The day before the nursing system broke down.  A nurse was upset with me, I suggested she take a few days off, she quit, I got upset and asked her why, she refused to answer...then her superior called me and told me that they were no longer placing nurses in our home because I was harrassing the other nurse who refused to tell me why she was quitting....

So now it's just me and Anaya.

Our nursing agency, is refusing to admit to my lawyer and the Nursing Support Services that they said they would no longer place nurses in my home.  Knowing that they are lying through their teeth certainly makes me uncomfortable about how they now want BACK IN to our home...ugh.  My lawyer is dealing with it and will likely ask me to take down that paragraph...but OH! I'm so mad at them for abandoning us right now.  I don't trust them. This is my OPINION and I am entitiled to it.  It's called freedom of SPEECH.

Given that Anaya is incredibly sensitive and vulnerable right now, possibly in her last stages of life I am taking this very seriously and will care for her myself.  I will be with her every moment unless her daddy or some other trusted friend is with her.  I pray and I beg God to let Anaya see her second birthday.

I even allow my mind to wander past that.  I allow myself to imagine her getting better.  I imagine her whole, beautiful, walking, talking, smiling, playing.  I believe in Healing Anaya.

Please help me stay home with her.  Please.  I cannot leave my baby with a stranger to die.

Thursday, August 11, 2011

Love Heals

Brent, Anaya, Camara
Throughout the past weeks...Brent has been so incredibly helpful.  We have both learned many thing about ourselves separately.  I have looked deep inside myself at my hurts, and he has looked at his.  Although we live in different houses we have decided to open ourselves to loving each other again and starting over.  Our whole family is receiving counselling individually, and as a group.  We are pulling together through this hard time and we are open to the joy and love that Anaya has brought into our lives by being born to us.

Solara is overjoyed to know that we love her just as much as we love Anaya and always have.  We are considering taking family time out from life...but we'll see how things go.  Anaya has been so sick these past few days that each moment is even more precious.

She has severe pneumonia and is now on very strong antibiotics and morphine.  The morphine is to help keep her comfortable.  There was nothing they could do to help us at the Hospital.  After the chest x-ray showed bi lobe pneumonia, there was a rumour that it looked like TB and then they tested for TB and put us in isolation.

The room was stuffy and uncomfortable.  The doctor came in and told us that Anaya most definately did not have tuburculosis and that there was nothing that they could really do for Anaya at the hospital short of putting her on heavier life supports.  Dr. Kalia suggested that my house was "the most well set up palliative home" he'd ever seen, and that the best place for Anaya to be was at home.

We immediately packed up her stuff and I called our nurse.  She encouraged me to stay in the hospital...I explained that we weren't, that the doc said it was best to go to hospice or home.  She disagreed.  I called her supervisor and suggested maybe she should take a few days off.  Then her supervisor called me and advised me that Nurse C will no longer be coming in.  WHAT THE HELL!??  I was told that my next nursing shift will be tuesday the 16th with MoMo.  I can't believe the ineptitude of Resourceability Nursing Agency.

I haven't left Anaya's side all day.   She's been sleeping and healing. Thank god for the people in our lives who are so incredibly helpful.  Thank you to Nurse Anna (friend) for coming over last night, and again tonight to VOLUNTEER her time to help me with Anaya so that I can sleep.  Thank you to Dr. Kalia - who makes house calls to see my precious one.  Thank you to Carla for the food yesterday, Thank you to Pam for the Spaghetti Sauce, Thank you to Kootenay Christian Fellowship and Loreli for helping with the house cleaning, Thank you to Lisa and Ellen and Sharon and Candace and everyone who loves Anaya.

Thank you to those of you who have paid to subscribed to the blog, and those of you who have bought a bumper sticker or donated to help fund our life with our Angel Anaya.  Without your support we'd be much worse off.

Thank you to those who remind me to remember Solara in everything that I do.

Thank you, God, Universe, Great Spirit, for allowing me this life that I may feel, experience, know, love, and create.

Solara and mummy's time

Solara and I spent two incredible days all alone together. We drove, we talked, we cuddled, we imagined, we played.

It was good for both of us. Solara understands the situation, Anaya is the sickest she has ever been and needs me.

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

Wednesday, August 10, 2011

Long day

2 am phonecall.
3 am pack and go
3-7am through the mountains
7 am ambulance takes Brent and Anaya.
7:30 i arrive at hospital
7:45 I lie in stretcher with baby
9 am chest xray bloodwork
9:30 - 1 sleep.
1-3 TB test meet doc, pack up go home
3 call nurse Anna to help
3:30 Anaya and mama in bed at home
4:00. Nurse Anna hangs out
4-9 mama and baby sleep
9- Anna brings pizza! Yeah

10-back to sleep

-Another day in paradise, another moment with my little love. Forever embedded in my heart.